A shared journey: insights from the Banksia Younger Onset Dementia Support GroupPublication details: Fitzroy, Melbourne Brotherhood of St Laurence 2015 Description: 28 p. PDFSubject(s): Dementia | -- - Younger onset -- - Support groups | DDC classification: 616.83 WIC Online Resources: Report | Summary
Seuwandi Wickramasinghe and Ashley Carr are Research Officers, and Dr Helen Kimberley is Senior Manager, in the Retirement and Ageing transition team of the Brotherhood’s Research and Policy centre.
This study of the Banksia Younger Onset Dementia Support Group, a pilot program to support people with younger onset dementia in the Frankston area of outer Melbourne, found that the participants valued being involved in choosing and organising activities that they find meaningful and enjoyable, and having the chance to share their experience with others.The Brotherhood of St Laurence’s Banksia Younger Onset Dementia (YOD) Support Group in Frankston, Victoria, was created in 2013 in response to an identified gap in services. Funded by the HACC (Home and Community Care) Growth Fund, the pilot project recognises that the social and personal needs of younger people with dementia and their carers are distinct from their older counterparts, because of their stage in life when dementia is diagnosed. Moving away from conventional ‘professional’ service provision, the Support Group recognises members as individuals with expert knowledge stemming from their personal experiences of dementia. It assists them to initiate, plan and engage in activities, maintain social links and raise awareness of YOD in the community. This summary reports on an evaluation that used a Participatory Action Research approach to assess how well the Support Group had achieved the following short-term outcomes (first 12 months): • members’ participation in activities that are aligned with their interests • established links with the local community and use of local community support • increased number of members • established links with relevant agencies and services • slowing progression of dementia and delaying residential care • a documented model of social and personal support that is transferable across other YOD specific Planned Activity Group (PAG) programs